October 29, 2013

Dear John,
I didnt realize, but we have a story. Life has a funny way of going on whether we are in control
or not, whether the day is filled with good or badlife goes on whether we suffer or succeed. For the
past year we have had a life filled with a tick-borne disease. This disease made its way into our
daughters life. A seventeen year old girl, full of life, full of dreams, and full of hopes and personal goals
for her future.
Late summer of 2012, Taylor, began to mention she was tireda lot. She would go through
periods where she would complain of dizziness, fatigue, body aches, and then she would run a mild
fever, which would be present one day, gone the next. By mid August, she started marching band camp,
which for anyone involved in such an activity, you know the days are long, hot, stressful, and tiring. It
was obvious that each day was becoming more of a struggle and following an incident where Taylor
passed out, we made an appointment with our family physician. The first time we missed the Lyme
factor was when we, along with our doctor, focused on Taylors fluctuating blood pressure, dizziness,
and general fatigue, and chalked it up to a required change in her low dosage of a blood pressure
medication she was taking for Raynauds Disease (circulatory disorder which doesnt allow your blood to
flow to your fingers and toes, leaving a person to feel cold and causing discoloration of these
appendages.) Of course changing the dosage in her medication required several weeks to allow her
body to adjust to the new dosageand so more time was lost.
As Taylor began her senior year of high school, the normal things occurred, football games, band
competitions, applying to colleges, classes, homework, projects, and for Taylor, she began it with an
ever growing weight upon her, as she continued to fail physically. Taylor again, passed out at school and
complained often of experiencing vertigo like sensations. When we returned to the doctor, it was
decided that the blood pressure medication would be discontinued and allow her body to adjust to no
medication in her system. This would be the second time we missed the Lyme factor.
Mornings became a struggle as she complained of the ongoing fatigue and she could not get a
good nights rest. We scheduled trip three to our family physician when she continued to experience
the vertigo and dizzy spells, now compounded with a fluttering/racy feeling in her chest. A Holter
monitor was given to her to wear for a 24 hour period to record her heart activity and we waited for the
results, which eventually came back with no findings for concernthis would be third time we missed
the Lyme factorand so more time was lost.
The days turned into weeks, weeks into months. Taylor continued to put on a good face, was
accepted to the college of her choice, Indiana University of PA, participated in activities, but unbeknown
to us, the Lyme disease was attacking her and we didnt even know it existed. In November, a few days
before we left for Philadelphia, where Taylor was scheduled to participate in the 6ABC - Dunkin' Donuts
Thanksgiving Day Parade, we made another trip to our doctor to discuss the mounting dizziness Taylor
was experiencing. She was prescribed a motion sickness patch and we scheduled a follow-up
appointment for early Decemberthis would be the fourth time we missed the Lyme factorand so
more time was lost.
This was Taylors second time participating in the Thanksgiving Day parade and knew it was a
demanding schedule with an intense one day rehearsal, bringing students together that had never
performed as a unit before this time. It would be late into the night before the parade, following the
day long rehearsal, and the bus ride back from New Jersey to Philly, where Taylor would begin to
experience migraine like activity and extreme fatigue. We received a call at our hotel from the director
of the organization that Taylor was part of representing, stating he had one ill young lady on his hands
and did we want to come get her. Her dad and sister made their way by taxi to get Taylor to bring her to
our hotel. Here it is: as a parent, you know your child is sick. You dont know why. You have done all
the things you think are supposed to be doing. You question a thousand things running in your mind.
Nothing makes sense. They look at you for the answers. You have nothing.
Taylor did not participate in her last opportunity to march in the Thanksgiving Day parade and
we returned home with a girl that was increasingly ill. From that moment until Christmas, we watched
our daughter nose dive into a pit with no sense of escape. Taylor would experience insomnia, brain fog,
joint pain, fever, memory loss, overwhelming fatigue, and body spasms with a twitching effect of her
face and shoulders. We finally were referred to a neurologist, but had a months wait until we could be
seen by him.
While we waited the situation went from bad to worse as Taylor began to show signs of a
seizure like activity, where she would fade out of a conversation she was participating in, staring blankly
into space. She would scratch wildly at the one side of her face, saying she always felt like it was on fire.
Sometimes she could feel herself fading, other times, she was unaware until she came out of it, finding
everyone staring at her in disbelief or not knowing what to do or what was happening. I phoned our
family physician and asked for blood work to be ordered for anything and everything so that when we
arrived at the neurologist we were ahead of the game.
I made calls every few days to the neurologists office asking them for an appointment if they
had any cancellations. The seizure like activity intensified, teachers started to note changes in Taylors
ability to concentrate and she exhibited clear signs of memory loss and illness. More and more people
were becoming concerned and for her safety and others we told her she was no longer allowed to drive
until we had some answers.
If a person can maintain through the physical hardships, the mental and emotional obstacles are
bound to wear down even the strongest of those in the fight. As we got the girls up for school early one
morning, things came to a breaking point as Taylor lay in her bed, unable to lift her head, feverish,
exhausted from another night of constant twitching and restlessness. Tears welled in those once shiny
blue eyes and as they those tears escaped, Taylor began to share the overwhelming burden of having
friends distance themselves from her as she progressively got sicker. She shared rumors of people
saying she was faking and that she was an attention seeker. She was becoming that sick girl.
Screaming with helplessness she looked at her dad and me and begged us to tell her what was wrong
with her.
Within the next few days our family physician called and said her blood tests were back and we
made an appointment to meet with him. As he reviewed the lab work, he reported everything came
back in the normal ranges, suddenly stopped, and then exclaimed with great surprise that Taylor had
tested positive for Lyme disease. A DIAGNOSISFINALLYand explanation of what was wrong. Taylor
was in the later stages of Lyme disease, which explained all the complications she was suffering with.
The results were forwarded to the neurologist, a 28 day course of Doxy was prescribed, and Taylor and I
celebrated the relief of knowing what was wrong. It was a short lived celebration as Taylor suffered one
of the worst seizures up until that time while at a coffee shop she visited. Imagine the horror she felt as
she came out of it, the shop in silence, everyone watching as I yelled her name repeatedly trying to bring
her back to me. Her joy was quickly dampened and the seriousness of the situation was again pressing
in on us.
The next morning I called the neurologist, asked to speak directly to the nurse, and explained to
her the severity of Taylors symptoms. She called me within a few hours of speaking with the doctor and
told us to be there at 9 a.m. the next morning. The neurologist the next day revisited much of what our
doctor had told us, agreed with the 28 day Doxy therapy, scheduled an EGG of the brain due to the
seizure like activity and an increasing light sensitivity to fluorescent lighting, and scheduled an
appointment with a cardiac pediatrician from Pittsburgh due to the continued heart racing.
Christmas was a time of ups and downs. There was some improvement with the Doxy, but
Taylor continued to suffer with the seizures, one taking place as her sister and friends sat around the
dining room table laughing and putting together gingerbread houses. The emotional aspect continued
to takes its toll, while we hoped for more marked physical improvement then we were witnessing.
By the first part of 2013 school was back in session, time continued to fly, the appointment with
the pediatric cardiologist came and went with all good results. The EGG showed no abnormal activity,
but sitting in a classroom with the fluorescent lighting became near impossible. By doing our own online
research we found a special rose colored lens that Taylor could have in her eye wear to help with the
flicker of the fluorescent lights. One doctor told us it was nonsense and he never heard of such a thing,
the neurologist said it couldnt hurt and we should try it. To this day it helps, but doesnt completely
take the issue away. The principal of Taylors school at the time was instrumental in setting up
guidelines for Taylor to be in a classroom with options of where in the building she could go to test,
study, or go in general when she didnt feel well. He ended up modifying her school schedule and
allowed her to work from home and go to school for a brief period in the morning. He arranged for the
college she would be attending in the fall of 2013 to partner with her school so she could begin online
classes. Without his support and the opportunities he provided, Taylor would have never been able to
complete her senior year of high school on time and graduate with her class.
Remarkably enough Taylor graduated with high honors, continued with college classes over the
summer, began to drive again after the seizure behavior diminished, had a summer job, and managed to
enter miniature horses in showmanship categories in our local agricultural fair in mid August before
leaving for college.all the while striving to overcome the physical, emotional, and mental aspects of
Lyme disease.
It remains a day to day battle and over the summer we saw marked improvement, but with
definite residual effects like tiredness, chronic joint pain, the ongoing light sensitivity, and some of the
muscle spasm/twitching that started in the fall.
As Taylor has settled into college, classes couldnt be better, friendships are being established,
she secured a part-time job, joined IUPs Equestrian team, pledging Phi Sigma Pi National Honors
Fraternity, is being inducted into Delta Alpha Pi which recognizes the academic accomplishments of
college and university students with disabilities, and continues to meet the collegiate challenges that all
students facebut once again her health has started to decline. Fatigue, recently diagnosed anemia,
brain fog, and some memory loss have started to become part of the daily battle. Most recent were
rare blood findings and we are now scheduled to meet with a blood specialist on November 1, 2013.
Why did I take the time to detail what I have put down on paper? One, this disease has now
become part of our family history. It is not only a defining characteristic within my childs life, but in her
familys life as well. This has been a walk I never could have imagined. And I have always defined Taylor
by her strength, but this took strength I didnt even recognize she had. Lyme disease affects the person
infected and from there touches everyone around them.
Second, I took the time to detail this information to show others how debilitating this disease
can be, how it goes undiagnosed, how misunderstood it is, how people think you can simply treat it with
a course of antibiotics and move on, to show the residual effects, and to show others how this disease
treats one body and may attack another body completely different. This disease is harsh, dangerous,
and highly misunderstood. It is time to BITE BACK. The voices of those it has touched must be heard.
Finally, I hope anyone that might read this realizes how intrusive this disease is for the person
with Lyme disease and their family around them. Our livesTaylors, a mother, a father, and a sister,
were consumed by something we couldnt see, didnt know how to fight, still dont know how to fight
back fairly and properly armed, and hope the reader takes a moment to appreciate that here we are
more than a year later and we are still at war.
Life goes onbut it is unjust, unfair, to allow people (and pets) to suffer when more can be
done. The stories must be written, told, shared, and we have to keep the spotlight on this disease. We
have to have compassion, empathy, and we must be our own researchers and advocates. We have to
move forward
Most Sincerely,
Teddy K. Householder